Financial, Ethical, Legal And Social Issue Links

General Resources

The Health Resources and Services Administration (HRSA) is an agency
under the Department of Health and Human Services Administration. HRSA
provides national leadership, program resources and services needed to
improve access to culturally competent, quality health care. This project
is supported by a grant from the Genetic Services Branch of HRSA (MCH
Project #: 1H46 MC 00189-03).http://www.hrsa.gov/

The Save Babies Through Screening Foundation provides parent advocacy
and general information about expanded newborn screening.http://www.savebabies.org

The Genetic Alliance’s website includes information about parent
support groups, genetics resources, a disease infosearch, and genetics
feature articles. Information is also available in Spanish.http://www.geneticalliance.org/

The Family Voices website includes resources and program information
for families of children with special health needs.http://www.familyvoices.org/

The March of Dimes is an organization that supports resources to have
healthy babies.. The site includes a news section, a newsletter archive,
and feature articles on topics such as pregnancy and premature birth.http://www.marchofdimes.com/

The Genetic and Rare Diseases Information Center employs experienced
information specialists to answer in English or Spanish questions from
the general public, including patients and their families, health care
professionals and biomedical researchers.http://rarediseases.info.nih.gov/

Genetests provides reviews of select genetic disorders including those
conditions often included in newborn screening. It also contains contact
information for clinical and research genetics laboratories located worldwide.http://www.genetests.org

Policy Statement on the retention, storage and use of sample cards from
newborn screening programs developed by a joint subcommittee of the Human
Genetics Society of Australasia and the Division of Paediatrics of the
Royal Australasian College of Physicians.http://www.hgsa.org.au/documents/item/32

Babies First Test is a national newborn screening clearinghouse. This clearinghouse provides educational and family resources at the local, state and national levels. Information about each state’s newborn screening program is available through this website.http://www.babysfirsttest.org/

The Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) is a national newborn screening program that provides data, technical assistance and training to newborn screening programs across the country. The website also has a state profile for each state’s newborn screening program.https://www.newsteps.org/